By Mary Ellen Bogucki
When I think of my daughter’s journey with Autism, I can think of many different analogies. One is the game of Jenga. There’s a tower missing a few blocks, but it’s still standing strong. Then in swoops a person who may remove a strategy, a modification or just strike a verbal blow that makes the tower sway and lose its footing. Oh…but it still balances without fully falling and I think “Yes! We still got this!” Then, another block is removed; it may have been a comment or an unexpected change to her schedule. It possibly may have just been my child having a bad day. Unfortunately, this time, the tower rocks and in seconds the blocks topple. I see all that progress disappear and I’m left wondering “What do we do now?”
I can tell you what I did. First, I got angry at whom or whatever took away our progress. Then, I got sad and thought about giving up the fight. Why should I continue to put my daughter through the heartache, the failures or the setbacks? Why make her work so hard? I cried, I was sad for her future and for our family, but then I looked around and saw the blocks still there. Yes, there was no longer a tower, but the blocks were still there and they were ready to be built again. So, I looked at what worked before, and I went back to the beginning if I had to. We swung, we spun, we brushed and we reincorporated strategies we thought we no longer needed. I fought for those things that may have been removed from her IEP, like speech therapy or social skills training. If it was an incident that caused her regression, I found ways to either fix the problem or work around it. I tried hard not to let one person’s attitude ruin our ability to move forward. I reminded myself we made progress before, we can do it again.
Yes, there are times you may feel like you are trying to walk up stairs that have flood waters gushing down them. Your feet may continue to slip out from under you and you may fall back a few steps. Sadly, I felt that way a lot. When our daughter was diagnosed (age 5, University of Chicago) we were given a list of recommendations to follow and have the school follow. Those recommendations worked very well, but we still faced barriers and road blocks. I couldn’t stop trying to push her forward, so I started attending seminars on sensory integration, Autism, social skills training etc. I bought books and I made copies for her school team too. I did everything I could do with her at home, to help her keep progressing. We worked every day during summer vacation and we were making progress.
Another thing we discovered was that many of the Autism departments at the main University hospitals are involved in research studies and are always looking for participants. When our daughter was entering middle school, we became involved in a family study, at the University of Illinois and for our participation, she was re-evaluated. Once again, we were given a list of updated recommendations. These recommendations were so beneficial, especially since she was starting a new school. The Autism evaluation was not cheap, but by participating in the study, which helps all on the Autism spectrum, it was free. As I have said before, we were lucky, we saw progress. Not everyone responds to the same therapies, so some searches can take longer.
In the very beginning we had to overcome all the sensory, speech and communication issues, before she could be mainstreamed with a one-on-one aide. As those areas improved, we faced academic issues and social issues. None of her issues magically disappeared, she just learned how to cope and tolerate them better. If you’re like me, there will be days you may find yourself crying, thinking this will never pass. I had so many of those days, but we also had and still have so many more amazing days too and we continue to see unbelievable progress.
Again, we have been lucky. I have friends in the Autism community who have adult children who have not made as much progress. I witness the parents struggling and the child/adult suffering. I wish I could give them the answers that would help their child progress. I hear their cries of not knowing where to turn. I see their exhaustion and their frustration. My heart breaks when I see the hopelessness they are feeling. I understand their anger when they want to give up and who am I to tell them to keep trying?
So, I look for other options that might help them. Every individual is different, what works for one doesn’t always work for the other. I do believe participating in social media groups can help, along with other support groups. Many others are experiencing the same situations and sharing their experiences. You may find that what they’ve done, can help you. Occasionally, we need to stop focusing on just the individual with special needs, but also focus on ourselves and find ways to get the help that we need. Whether it be respite care or reaching out to local schools/churches. Most, if not all high schools or church youth groups have service programs; maybe a high school student can run errands for you to earn service hours. If you live near a college, check in with their Special Education or Therapeutic Recreation departments. You may find students studying to work in the special education field, may be more than willing to help you, so they can learn even more about your child and his\her challenges.
Ask the question “What services are available for my child?” You could start with your child’s special education team, your local disability/social service organizations and especially other special needs parents. I have found that if you don’t ask, people may never tell you and if you do find out, it may already be too late to receive them.
We never stop searching for ways to help our daughter improve and often people comment on how high functioning she is. I want people to understand that she wasn’t born high functioning and we all continue to work tirelessly to continue the progress. Unfortunately, Autism often morphs into other comorbidities. Once we saw the presence of meltdowns and meaningless speech, now we see obsessive compulsive disorder and rituals. We see anxiety and depression and we see exhaustion from trying to appear high functioning and “typical” all the time. We no longer see speech therapists or occupational therapists, but we see social workers, psychologists and psychiatrists and we are learning everything there is to know about cognitive behavioral therapy.
When life becomes too overwhelming and I want to give up searching for progress, I take a tip out of Bree’s cognitive behavioral therapy. I slow down, I list each problem separately and I work toward solving one problem at a time. I stop trying to tackle them all at once. I keep my lines of communication open with her doctors and I focus on Bree’s strengths. When I focus on her strengths and not her weaknesses, life isn’t overwhelming or hopeless. Surprisingly, it is often very amazing and rewarding. I realize that my daughter’s journey may be very different from your child’s journey. My only hope is maybe one thing I share can help someone. My hope is that you can get through a bad day and take a break if needed. I hope you know we all travel this journey together; you don’t have to travel it alone. I hope you can continue to find ways to not give up the fight and I hope you can experience progress.
Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger. Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today. Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort. Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services. She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club. Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.
